stiffness with reduction plan

[Nanatoo]

I started on 20 mg of prednisolone early July and had reduced to 12mg by mid September without any problems. I caught Covid and pain returned but only in my left hip so I increased to 15mg for a couple of weeks while the pain subsided. During October I’ve decreased to 13.5mg and have some mild stiffness so my question is do I persevere with 13.5 until the stiffness goes or go up half a mg. The stiffness may just be down to age and the wet weather of course.

[piglette]

I have discovered you should never try and tough it out for more than a few days. PMR always wins. Provided it is the PMR that is!

[PMRpro Ambassador]

I would try adding the 1/2mg and see if it makes a difference - then give it a few weeks before trying again.

[Nanatoo in reply to PMRpro]

I will do that. Tried painkillers which had no effect so think it’s PMR linked

[Nosmell]

I’m 74 so we have that in common! It’s so hard to tell exactly when PMR pain returns whilst decreasing steroids, isn’t it? If your pain becomes really difficult to cope with, you could take an extra mg…… but can you talk with your rheumatologist? I decreased gradually down to 4mg but the PMR was awful, so I increased gradually and am fine on 7mg. Don’t know what rheumatologist will say at next appointment. Good luck - it seems a very fine balance. ❤️

[Nanatoo in reply to Nosmell]

I’ve given up on the rheumatologist I was seeing as his main concern was getting me off steroids and would not listen to my choice of a slow taper. I had the disabling pain so I’m not going to risk going back to that

[Nosmell in reply to Nanatoo]

I honestly think that we, as patients, have to control Prednisolone/PMR - we know the aim is to decrease very slowly but I believe some people are on a low dose for ever. ❤️❤️

[Nanatoo in reply to Nosmell]

I have two friends who are on very low dose preds and have been for years. Both are very active,in their 80’s and have all their “ marbles”

[crazyknitter]

Hi, I have just managed to completely stop the prednisolone since the beginning of Sept and felt better for it. I have also lost nearly 2stone since May. I do get stiffness at times but the distance I can walk has increased and doesn’t wear me out as it used to. I had been taking it about 15 yrs and it took a very long time to stop. I had a bad chest infection and took 40mg for 5 days with antibiotics. That’s gone now but my energy levels are low. I’m going to just see what happens for now I don’t have pain and will put up with the stiffness for a bit I hope this helps I’m 74

[Jackoh in reply to crazyknitter]

That’s encouraging Crazyknitter that you managed to come off after 15 years! Well done you!! Xx

[crazyknitter in reply to Jackoh]

It took as very long time to tail off. Towards the end it was 1mg down every 6 to 8 weeks. I make sure that I walk a little most days unless I don’t feel well. I still have week muscles and stiffness in shoulders and legs but if the pain starts again I’ll go and see my GP.

[crazyknitter in reply to Jackoh]

actually it wasn’t 15 years. I think that was a typo and I’ve edited it now

[Nanatoo in reply to crazyknitter]

I’ve only been taking preds since early July so still feeling my way but am determined to not return to the disabling pain and stiffness and will taper at a sensible rate not at the breakneck speed the rheumatologist would like

[PMRpro Ambassador in reply to crazyknitter]

So had you been on pred before developing PMR? You said 2 years ago you had been diagnosed 6 years. We have had a few who took that sort of time to get off pred.

[crazyknitter in reply to PMRpro]

I have edited my original post. Sorry about that. It’s been 8 years now that I’ve been diagnosed

But was having symptoms for several years before that and had various short courses during that time.

[PMRpro Ambassador in reply to crazyknitter]

Gives me hope! But I suspect it depends on the adrenals agreeing to come out to play!!!

[Fetlar73]

Hi Nanatoo. I had PMR late 2021 I took Pred. For about 15 months. I was determined to get off the Pred. because of the side effects. So I ignored bareable aches and pains. Like you say, they could be age related. (I am 78 years weigh 9st. 11 pounds. ) try to eat Mediterranean diet. ( we are what we eat ) I buy organic when I can afford it. So the whole time I reduced I had aches, especially when getting out of bed. Things get much better as the day goes by. I stopped taking Prednisolone in April this year. Reducing 1 mg until the last 1 mg when I then reduced by 1/2 mg instead of the entire 1 mg. I still get aches in the morning but always bearable and after a hot shower and a few stretches in the shower, my mobility is much better. I also do 15 minutes gentle yoga for osteoporosis, YouTube . Mainly chair based for older people. I find that makes a difference.

I read that there is a train of thought that thinks that unless you have a really bad flair that to keep yo-yoing with the Pred. Can make the body sort of “immune” to it. I don’t know if this is true, but I can live with aches but not the Pred. My mobility is not as good now but I possibly require a knee replacement Again age related. As I say I am talking about bareable pain.

As this forum says, we are all different and our journeys are different. I send you every good wish.

[Nanatoo in reply to Fetlar73]

I like the idea of chair based Yoga so will look at that. I am like you in that I don’t want the yo-yo ing and was doing well on the slow decrease until I had Covid which put me back a bit. Slight pain/stiffness would not have bothered me, was more the fact it was in my neck,upper arms and hips and I didn’t want it getting more severe. Thank you for your reply and I hope you get your knee replacement

[Scarysit]

I started at 20mg pred when diagnosed in April 23, attempted to reduce 2.5mg but got to 15mg and symptoms recurred so bounced back up to 20mg by GP.

Plan then was reduce by 1mg every 4weeks. Was going really well. Then GP decided to speed things up and reduce 1mg every fortnight.

I got to 15mg and after 4 days neck stiffness and pain was so bad I couldn’t lift head off pillow so I’ve increased back to 16mg.

This is not an easy journey although I think the fact that I had Covid jab a few days ago may have contributed to my issue.

Don’t put up with pain, be kind to yourself, listen to your body.

[Abbeynan82]

We tend to blame other things than PMR for pain and doctors tend to give us painkillers. In my experience has been that I have not been able to go below 16 mg Prednisilone for three years. Having reduced immunity, I then caught Covid and a lower respiratory Infection which put me in hospital for 4 weeks. Five months later after an incomplete recovery, I was back in for the same thing for another 3 weeks. Lungs are scarred. My advice is to Stick to a good doctor because playing around with the advice of an amateur like me is just plain stupid. This is a serious disease with serious outcomes. Hospitals don’t even get it and GPS struggle. Rheumatologists work within recognized parameters and may not get it. Often all three just treat symptoms and miss the PMR altogether. I’m all but bed bound: live with 3x carers. Covid plus PMR did this.